Advocates reach out to a neglected community
A dialogue between two advocates on homeless communities battling cancer
Kirk Royster and Cynthia Ryan are advocates who participated in the Scientist↔Survivor Program at the 2010 Science of Cancer Health Disparities conference—dedicated to highlighting the disparities that exist in cancer research and care. Kirk works with at-risk cancer patients and survivors in New York City, while Cynthia engages with underserved populations in Birmingham, Ala. The AACR’s Survivor and Patient (SPA) Advocacy Department spoke to both of them about how cancer affects all members of the community, especially the homeless.
Kirk Royster is a health educator for a New York City nonprofit organization that seeks to improve the health and well-being of homeless men, women and children by promoting healthful behaviors and providing medical, behavioral, social and shelter services. The organization advocates for the rights of homeless people and for public policies that support stable individuals, families and communities, and that aim to end homelessness. Its major goal is to provide health information to homeless individuals and families in a clear, concise, culturally competent manner to promote client understanding, motivation, empowerment and positive health behavior change. As part of the Health Education Program, Kirk aims is to enhance the provision of health information by coordinating formal group interventions and individual counseling sessions dealing with a range of health topics relevant to his clients' needs. He is challenged by addressing the health needs of different populations at shelters for men, women, seniors and families and at soup kitchens and day centers. Kirk also counsels and tests clients for HIV in Manhattan, Brooklyn, Queens and the Bronx as part of his outreach. As a prostate cancer survivor, he is a member of the New York chapter of the US TOO International prostate cancer support group.
As a 17-year breast cancer survivor, an academic and a freelance writer, Cynthia Ryan has had the unique opportunity to conduct research on issues relevant to survivors and to communicate this information through scholarly and public forums (including CR magazine). She has a doctoral degree in English with a primary emphasis in rhetoric, and her research addresses messages about cancer and survivorship conveyed in the popular media and a range of other institutional settings. She currently acts as an associate professor of English at the University of Alabama at Birmingham (UAB). During the past year, both her research and outreach efforts have centered on populations that exemplify disparities in cancer education, institutional access and funding of needed health care. Her work has taken her to Church of the Reconciler, an organization with a mission is to assist the homeless in Birmingham where she has served as an advocate and liaison for numerous homeless individuals with cancer. She has also become involved in an investigation of the incidence of cervical cancer in Zambia, where she traveled as a professor in May 2010 to conduct research and to present on her work on cancer discourse.
SPA: Cynthia and Kirk, thank you both for taking the time to speak on the issue of homelessness and cancer. While you are most likely addressing similar barriers and concerns with the homeless communities you work with, the demographics of your constituencies are strikingly different. Would you each briefly describe the environment in which you conduct your advocacy work?
Cynthia: I think that there are obviously some unique features to the population in Birmingham. A good majority of the homeless with cancer here are African-American and there’s also, of course, the stigma of some fishy ethical conduct of the medical profession here in Alabama: Tuskegee is still very much on the minds of people. I think that’s the uniqueness of the population.
We are fortunate enough to have a county hospital here in Birmingham which many cities and other counties don’t have or have but aren’t functioning, so I think that is a definite positive with the situation here. The people who are homeless and have health problems may not immediately go to see a doctor, but there is a facility available that they may access. The care is not free—they still have to provide a co-pay, which, depending on the service, is anywhere from $5 to $20—but I also know from going to Cooper Green [Mercy Hospital] with Edwina and some of the other people I have become acquainted with, if they can’t pay, the people who work there are well-aware of that and say, "That’s OK—don’t worry about it."
One issue that has been persistent is the issue of getting prescription drugs because even though they are greatly discounted, when you’re homeless and have no income whatsoever, and you can’t afford even $10 for a co-pay for medication, that’s a real issue. The Church of the Reconciler—through which I’ve kind of come to know the community—has been great in that regard because it has provided vouchers for those co-pays for medical visits and also vouchers for prescriptions. The system is definitely wrought with other problems—but it’s working as well as it can, I think.
Kirk: I work for a non-profit organization here in New York that covers Brooklyn, Manhattan, the Bronx and Queens, that provides services for the homeless population: men, women and children. What we try to do is promote healthful behavior, as well as provide medical, social, shelter services and advocate for the rights of homeless people in our communities to help alleviate homelessness.
Cynthia: I think what distinguishes this environment is that we’re in Birmingham, Ala., so there is a bit of a history there. Most of the homeless people I’ve worked with who are dealing with cancer in particular are African-American. Many of them are skeptical of the health care system; many of them were raised in families of poverty, so they also have all of the associated issues that come with not really having good experiences with the health care system. The other thing I mentioned is that we do have a county hospital in Birmingham, Cooper Green, and I think that has been a positive because once you can encourage people who are homeless to go see a doctor, or seek treatment for the symptoms they are having, at least there is a facility they can go to only having to pay a very small co-pay. Or, if they are unable to pay, usually they’ll see them anyway.
SPA: Having heard the vast differences in demographics, what barriers to health care treatment do you feel both of your constituencies face—financial, logistical, psychological? Is there a common stigma that exists within the health care community when it comes to treating homeless cancer patients?
Kirk: I think here in New York, a lot of people live day-to-day, so battling cancer or other illnesses sometimes is secondary. A lot of people I come in contact with are not living in their place of origin; they don’t necessarily have access to a phone or shelter, so they are really focusing on seeking shelter and food, not necessarily health care and social services. I would say that another barrier is information. Since they don’t necessarily have access to a lot of information, it’s hard to make informed decisions. It’s hard to be your best advocate—to be an advocate for yourself. Another thing I would say is a concern—like Cynthia said before—is a bad misconception among a lot of minority populations. Particularly within the African-American population with the experimentation in our past, a lot of people are skeptical of clinical trials or any kind of health care they think is outside of the norm.
Cynthia: Yeah, I think that the thing is, a lot of us who have had better experiences with health care find that hard—there’s almost prejudice against people who have a mindset that it wasn’t that long ago that Tuskegee occurred and they were experimenting on African-American men. But the reality is that for many people—all of us—when such horrendous things have happened, that stays in your consciousness, that’s part of how you act.
I definitely agree with Kirk that one of the things that became crystal clear to me was that so many of the things that I assumed were common starting points for all survivors simply aren’t there for the homeless. We have a public transportation system, but it’s not terribly reliable. Also, people have to pay to use the bus system, so that in itself causes problems. Sometimes our survivors who live on the streets have to either find a ride or walk—all the way in the rain, or the cold, or the heat in the summertime—to get treatment and then they have to walk all the way back to where they are staying—under a bridge or in a temporary shelter. So you really can’t emphasize enough how different that experience is from someone who started out with very secure environmental factors who then became ill and that was the biggest challenge.
For a lot of these people, the idea that they might die of cancer is the least of their problems, and it’s a completely different perspective. I don’t know that I’ve noticed a lot of discrimination or poor assumptions on behalf of the medical community. I do think it is very common for doctors not to be trained to inquire about someone’s living circumstances, so a lot of times they are seeing homeless people, and they don’t know that they are homeless.
Kirk: Right, and I find that a lot of doctors and health care people, when they do care, like you said, if they don’t necessarily go deeper and ask those questions that can elicit a lot of great answers, a lot of homeless people won’t go deeper and give them more than they should; they only speak when spoken to. And one thing that I definitely come in contact with: If they are seeking treatment, it’s usually for something like high blood pressure or diabetes—especially diabetes. It’s such a huge problem that to even mention cancer is a challenge, especially to explain to someone who does not have any symptoms, “You need to get tested for prostate cancer. You need to get tested for cervical cancer." But why? I feel fine. That in itself is a huge hurtle to overcome.
Cynthia: And I think too, Kirk, that that builds on what we were talking about with where they start because that whole mindset of prevention and early detection and screening is based on a model for healthy people and these people are already in a situation—depending on your definition of health—they’re not in a healthy place so the idea that they are not in severe pain, or do not have any symptoms, that they would spend the little time and money they have to go to a doctor is kind of ridiculous.
SPA: Have you encountered any homeless cancer patients who have become homeless due to the expenses of cancer health care?
Kirk: No, I’ve come in contact with people who have cancer but not because of the expense.
Cynthia: There is one man who I profiled, Franklin Wells, who became homeless because of cancer. He was a licensed plumber and when his lymphoma continued to develop he transferred to Birmingham and he started treatment, and he went into the Hope Lodge, which is a facility sponsored by the American Cancer Society. At the time, that is what got him through the treatment. But when he had to leave he was unable to find work: He would have had to renew his license in another state and because of the trauma of cancer, he just simply fell through the cracks and took to the streets. So it does happen and I think of the people who were already homeless before they were diagnosed, certainly their life on the street has been made harsher or more difficult, I think, because of this accompanying their experience with cancer.
SPA: How do you and the organizations you work with help break down these barriers to cancer care and lobby for less discrimination and equal care?
Kirk: Our organization tracks and monitors legislation and policy issues. They look at trends that affect homelessness—homeless people in New York City—and they also work in tandem with the national, statewide and city agencies and they look for program solutions to many of the problems. I guess on a more grassroots level, we are out in the street and shelters, day centers and soup kitchens educating people. We go to where the population is and try to educate not only on health care but on the importance of cancer screening; on letting people know just because you are homeless doesn’t mean you will have inferior or no care at all.
Cynthia: I’m going to sound like a throwback to the '60s, but I think that what I do within the organization is primarily consciousness-raising. A lot of people—and it sounds like a no-brainer—are simply not aware of the unique problems of people who are homeless and also have cancer. So a lot of my own advocacy has been writing about it in a public form and trying to get people who run different programs around the city to connect. For example, after the article ran in CR called "Homeless with Cancer," I was contacted by the local Komen affiliates. The woman there said she had never even thought of this, this complex intersection of issues. Now we work with her, and she is helping to fund some further resources in terms of medical supplies and education programs. Also, within the University of Alabama at Birmingham system, we do have a medical school and they are doing outreach not really with the homeless community, but with women in the Black Belt in Alabama and Mississippi.
One of the things we’re attempting to do is to merge our interests so that the approaches they take to reach women and men in the Black Belt communities can maybe transfer somewhat to what needs to be done with people in our own city who are struggling with these issues. So that’s kind of where we are: Right now we’re all kind of looking at one another and saying, “Oh, I didn’t know you did that," and trying to figure out how we can all come together.
Kirk: I think that one thing that I am in the thick of right now is that I’ve noticed a lot of incentives seem to work to reach homeless populations. For example, we had an event for women who came in for a pap smear and received a pocketbook, and it was just overwhelmingly received by the shelter. We got a lot of women out who got their pap smears, they were tested, and they got their pocketbook. One thing that I want to do is maybe around Christmas or New Year's, is have a local optometrist test people—test their eyes and give away free glasses and get a PSA test. So I’m hoping to reach a huge population of men at a shelter by incentive. It’s about being creative, it’s about thinking outside the box and knocking down those stereotypes and barriers and educating people; getting people to see things they didn’t see before.
SPA: What are some of the myths of cancer you have recognized in the homeless communities you work with?
Kirk: I would say that a lot of people believe that if they don’t feel anything that they’re not sick or do not have cancer. I think that’s the biggest one I’ve come in contact with. I think a lot of people believe that to be sick you actually have to feel ill when in reality you could have a cancer growing in you and not have any symptoms, so that’s something that I’m always fighting and trying to tell people, "No that’s why it’s important to get tested."
Cynthia: It’s interesting, too, because when people have trust issues and you’re trying to convince them that something that’s invisible is actually something important to investigate, that’s a hard intellectual and emotional leap. It’s hard enough for people who are trustworthy, or do have trust in them, to do, so that’s a big issue.
One thing I have found that’s interesting—not interesting, I guess that’s the wrong word—is that we have so many health education materials, and we try to get the word out about breast cancer and prostate cancer, but for many members of the homeless community, they don’t have access to the same media. In many cases, it’s almost as though they have the same conceptions of the health care system that operated in the early 1900s. Edwina, for example, a woman who I worked with has metastatic breast cancer: She had a tumor for six years and she thought it was gas! She found it uncomfortable when she was eating and it was because she had a mass. It took six years and too much pain for her to finally decide maybe this is something that needs to be looked into. So I think a lot of it ties in to the fact that they simply operate in a different world to some degree.
Those of us who are advocates for cancer really know the complexity of the disease or diseases, and we know that it’s hard to pinpoint a really clear way of determining what kind of cancer someone has and that sort of thing. But for a lot of these folks, cancer is just a big "C," and like Kirk said, if they don’t feel something and it’s not impeding their lifestyle on the street, it’s just not something they’re going to pursue to find out what’s going on.
Kirk: Right, and I think in particular what we tend to take for granted is a lot of people have access to support groups in which you can get information; where you can get myths dispelled and make informed, intelligent decisions. Many homeless people don’t have that luxury. So whatever information they get, it’s coming from one person and whether or not they agree with it, it stays right there.
Cynthia: They are like a network, and that’s huge—absolutely huge.
SPA: What are the greatest challenges you find in working in a community with so little exposure to the health care system?
Cynthia: I have one, and it’s one that I wrestle with every day, and it’s that I feel torn in so many different directions because I go out and I meet so many different people and I become wrapped up in their lives. But the reality of the matter is that I don’t have enough resources, and Kirk doesn’t have enough resources, and the AACR doesn’t have enough resources, to fix the problem. And it’s very, very disheartening when one of these people will say, “Could you please help me with getting X?”—whatever X is. Maybe you can this time, and maybe you can’t.
For me, the biggest challenge is knowing that there is a system in place that helps people who have cancer and knowing that where some of these people are, it’s going to be a long road to get them into that system, if they even make it. It can be really hard. There are days when you want to go back to your own house and just think about things and just kind of mourn to a degree about what you can’t do for these people.
Kirk: I can’t add to that—I think that’s it. You have a limited amount of resources, a limited amount of time. I think a lot of times you’ll see a patient who is dealing with cancer and sometimes you see them only that one, maybe two times, and you want them to come back but sometimes they don’t come back—they move. So sometimes it’s hard because you want to follow up with people, you want to make sure they are getting the attention they deserve and need, but sometimes when they move around you never really know.
SPA: What has been your greatest reward in working with the homeless community? Is there much adversity to treatment due to mistrust or lack of knowledge?
Kirk: I think the greatest thing in my short time has been building relationships with people, gaining their trust, having them come to you and say they are taking small steps to live a better lifestyle. I try to tell my clients take to small steps if you’re dealing with a disease and you want to quit smoking. You’re not going to quit overnight; take small steps. And when people come back to me and proudly say they are taking better steps to eat well, that they’re taking their medication, that they’re smoking less, that they’re exercising—that really makes me feel good.
Cynthia: What he said! I think it’s the same thing: It’s the relationships. It’s knowing that Edwina told me recently that there are days when she can’t get up out of bed—really, off the floor—and she’s just really down and kind of wants to give up. But on these days she knows that she can call me and I may not be able to fix it, but I’ll at least cheer her up. That’s an incredible reward. Also, they’ve taught me—and this might sound terrible—but not to take my own diagnosis so seriously. I mean, I’ve got it pretty good. Yes, I have breast cancer, and yes, I’ve had it twice and it was hell, but you know, overall, I really don’t have anything to complain about. They in so many ways have taught me to take it one day at a time. They don’t have a choice: They have to take it one day at a time, and that’s really revealing.
SPA: Cynthia, in your recent feature in CR magazine, "Homeless With Cancer," one quote from Lisa Brown, a breast cancer survivor struggling with life on the street, really struck me. She said, "It’s a lot harder to kick cancer than it was to kick drugs.” Do you both feel many of the homeless patients you work with who have also struggled with drug abuse feel this way?
Cynthia: For Lisa, definitely the idea was that with something like drug abuse, she could make the decision. That was the one thing she had power over—she could make the decision not to use cocaine again. But when it comes to cancer—and I know that as a survivor this has always been one of the most difficult aspects of it—is never knowing for sure that it’s not there. You never have those moments again, I don’t think, where you’re completely carefree and that’s what she was implying by that comment: that feeling of “I can’t control this. This is the first time it hasn’t been up to me to quit something. If I do everything right, it will definitely go away.” It was devastating, you know, but it really resonated with me.
SPA: Both of you participated as advocates in the Scientist↔Survivor program held at the Science of Cancer Health Disparities Conference in Miami. Do you feel that homelessness is often excluded from talks of disparities in cancer care? If so, why?
Kirk: Yeah, I believe that when people think of disparities and we think of minority populations we only think in ethnic or racial terms. We think of African-Americans, Latinos, Asians and Native Americans, but we don’t necessarily think of homeless populations—of homeless people—because ethnic groups tend to advocate for themselves. But who advocates for homeless people?
Cynthia: I think that’s true. I think this was actually an issue at the meeting that was discussed quite a bit: Disparities are defined in such a way that they also overlook a lot of disparities. For example, one of the big debates at the conference was that we need to stop looking at testing ethnic-based populations and instead, to look more specifically at specific genetic factors that distinguish occurrence within a population. And I think that homeless people with cancer are still considered to be a lump: They’re all lumped together in a single group. But in fact, when you get to know these people on the streets, they came to homelessness in very different ways—they had different risk factors, they’re experiencing treatment very differently.
Some of the people I have worked with had very few side effects from chemotherapy or radiation. Others are unable to pick themselves up off the street and go to the doctor. So I think we’re going to continue to realize that we need to be more particular in the way we categorize people and I think we need to listen to them. Kirk makes a great point: Who’s advocating on their behalf? One thing I said during the "videocast" I did at the conference is that it’s not that these people have nothing to say—they have a lot to say. They want to have a voice but we are simply not listening, and it’s pathetic. I think that we can’t say we’re addressing disparities if we’re not willing to open up the continuum of what creates disparities, or how they can be defined.
SPA: What do you feel are ways forward to helping homeless cancer patients find treatment and continuous support and care? Do you feel like assistance shelters are sustainable short-term solutions? Can a community help create a long-term solution?
Cynthia: I tried to do this in the article and touch on some potential ways to help. In a lot of ways, existing programs could accommodate the needs of the homeless with cancer. For example, whether they’re providing food—say, food banks—what they could be doing is providing certain kinds of groceries or certain kinds of foods for people going through chemotherapy who can’t eat the same types of things. That’s one response. I think that most cancer survivors or at least a good number of us would be willing to use our expertise as navigators of the system for these people if we felt that there was a means by which we could connect with them. One the great gifts I’ve discovered through this experience is that I now have these connections. I realize there are things with the homeless community and me that are night and day, but there are also things we could come together on and we both understand.
One last thing would be that a doctor at UAB, Steohan Kertesz—he’s a big advocate for respite centers for homeless who have cancer. Whether it’s another situation—it could be post-childbirth, where they really need a place they could go and recover—they simply can’t go back to the street and the fact that that is happening in America is just simply ridiculous. We shouldn’t have people that are dying of diseases on the street. It’s bad enough they’re on the street in the first place. I think respite centers are a wonderful idea but communities have to be willing to support them, to give the space up in their urban or rural areas and they have to be willing to support them financially.
Kirk: I have nothing to add to that; that’s wonderful.